Tag Archives: Quantified Self Public Health Symposium

Access Matters

Someday, you will have a question about yourself that impels you to take a look at some of your own data. It may be data about your activity, your spending at the grocery store, what medicines you’ve taken, where you’ve driven your car. And when you go to access your data, to analyze it or share it with somebody who can help you think about it, you’ll discover…

You can’t.

Your data, which you may have been collecting for months or years using some app or service that you found affordable, appealing, and useful, will be locked up inside this service and inaccessible to any further questions you want to ask it. You have no legal right to this data. Nor is there even an informal ethical consensus in favor of offering ordinary users access to their data. In many cases, commercial tools for self-tracking and self-measurement manifest an almost complete disinterest in access, as demonstrated by a lack of data export capabilities, hidden or buried methods for obtaining access, or no mention of data access rights or opportunities in the terms of service and privacy policy.

Now is the time to work hard to insure that the data we collect about ourselves using any kind of commercial, noncommercial, medical, or social service ought to be accessible to ourselves, as well as to our families, caregivers, and collaborators, in common formats using convenient protocols. In service to this aim, we’ve decided to work on a campaign for access, dedicated to helping people who are seeking access to their data by telling their stories and organizing in their support. Although QS Labs is a very small organization, we hope that our contribution, combined with the work of many others, will eventually make data access an acknowledged right.

The inspiration for this work comes from the pioneering self-trackers and access advocates who joined us last April in San Diego for a “QS Public Health Symposium.” Thanks to funding support from the Robert Wood Johnson Foundation, and program support from the US Department of Health And Human Services, Office of the CTO, and The Qualcomm Institute at Calit2, we convened 100 researchers, QS toolmakers, policy makers, and science leaders to discuss how to improve access to self-collected data for personal and public benefit.  During our year-long investigation leading up to the meeting, we learned to see the connection between data access and public health research in a new light.

If yesterday’s research subjects were production factors in a scientist’s workshop; and if today’s participants are – ideally – fully informed volunteers with interests worthy of protection; then, the spread of self-tracking tools and practices opens the possibility of a new type of relationship in which research participants contribute valuable craft knowledge, vital personal questions, and intellectual leadership along with their data.

We have shared our lessons from this symposium in a full, in-depth report from the symposium, including links to videos of all the talks, and a list of attendees. We hope you find it useful. In particular, we hope you will share your own access story. Have you tried to use your personal data for personal reasons and faced access barriers? We want to hear about it.

You can tweet using the hashtag #qsaccess, send an email to labs@quantifiedself.com, or post to your own blog and send us a link. We want to hear from you.

The key finding in our report is that the solution to access to self-collected data for personal and public benefit hinges on individual access to our own data. The ability to download, copy, transfer, and store our own data allows us to initiate collaboration with peers, caregivers, and researchers on a voluntary and equitable basis. We recognize that access means more than merely “having a copy” of our data. Skills, resources, and access to knowledge are also important. But without individual access, we can’t even begin. Let’s get started now.

An extract from the QSPH symposium report

[A]ccess means more than simply being able to acquire a copy of relevant data sets. The purpose of access to data is to learn. When researchers and self-trackers think about self-collected data, they interpret access to mean “Can the data be used in my own context?” Self-collected data will change public health research because it ties science to the personal context in which the data originates. Public health research will change self-tracking practices by connecting personal questions to civic concerns and by offering novel techniques of analysis and understanding. Researchers using self-collected data, and self-trackers collaborating with researchers, are engaged in a new kind of skillful practice that blurs the line between scientists and participants… and improving access to self-collected data for personal and public benefit means broadly advancing this practice.

Download the QSPH Report here.

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QS | Public Health Symposium: Jason Bobe on Participant Centered Research

As part of the Quantified Self Public Health Symposium, we invited a variety of individuals from the research and academic community. These included visionaries and new investigators in public health, human-computer interaction, and medicine. One of these was Jason Bobe, the Executive Director of the Personal Genome Project. When we think of the intersection of self-tracking and health, it’s harder to find something more definitive and personal than one’s own genetic code. The Personal Genome Project has operated since 2005 as a large scale research project that “bring together genomic, environmental and human trait data.”

We asked Jason to talk about his experience leading a remarkably different research agenda than what is commonly observed in health and medical research. From the outset, the design of the Personal Genome Project was intended to fully involve and respect the autonomy, skills, and knowledge of their participants. This is manifested most clearly one of their defining characteristics, that each participant receives a full copy of their genomic data upon participation. It may be surprising to learn that this is an anomaly in most, if not all, health research. As Jason noted at the symposium, we live in an investigator-centered research environment where participants are called on to give up their data for the greater good. In Jason’s talk below, these truths are exposed, as well as a few example and insights related to how the research community can move towards a more participant-centered design as they begin to address large amounts of personal self-tracking data being gathered around the world.

I found myself returning to this talk recently when the NIH released a new Genomic Data Sharing Policy that will be applied to all NIH-funded research proposals that generate genomic data. I spent the day attempting to read through some of the policy documents and was struck by the lack of mention of participant access to research data. After digging a bit I found the only mention was in the “NIH Points to Consider for IRBs and Institutions“:

[...] the return of individual research results to participants from secondary GWAS is expected to be a rare occurrence. Nevertheless, as in all research, the return of individual research results to participants must be carefully considered because the information can have a psychological impact (e.g., stress and anxiety) and implications for the participant’s health and well-being.

It will not be surprise to learn that the Personal Genome Project submitted public comments during the the comment period. Among these comments was a recommendation to require “researchers to give these participants access to their personal data that is shared with other researchers.” Unfortunately, this recommendation appears not to have been implemented. As Jason mentioned, we still have a long way to go.

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QS | Public Health Symposium: Margaret McKenna

This week we’re taking a look back at our 2014 Quantified Self Public Health Symposium and highlighting some of the wonderful talks and presentations.  We convened this meeting in order to bring together the research and toolmaker communities. Both of these groups have questions about data, research, and how to translate the vast amount of self-tracking data into something useful and understandable for a wider audience.

As part of our pre-conference work we took some time speak with a few attendees who we thought could offer a unique perspective. One of those attendees was Margaret McKenna. Margaret leads the Data & Analytics team at RunKeeper, one of the largest health and fitness data platforms. In our conversation and in her wonderful talk below Margaret spoke about two important issues we, as a community of users, makers, and researchers, need to think about as we explore personal data for the public good.

The first of these is matching research questions with toolmaker needs and questions. We heard from Margaret and others in the toolmaker community that there is a near constant stream of requests for data from researchers exploring a variety of questions related to health and fitness. However, many of these requests do not match the questions and ideas circulating internally. For instance, she mentioned a request to examine if RunKeeper user data matched with the current physical activity guidelines. However, the breadth and depth of data available to Margaret and her team open up the possibility to re-evaulate the guidelines, perhaps making them more appropriate and personalized based on actual activity patterns.

Additionally, Margaret brought up something that we’ve heard many times in the QS community – the need to understand the context of the data and it’s true representativeness. Yes, there is a great deal of personal data being collected and it may hold some hidden truths and new understanding of the realities of human behavior, but it can only reveal what is available to it. That is, there is a risk of depending too much on data derived from QS tools for “answers” and thus leaving out those who either don’t use self-tracking or don’t have access or means to use them.

Enjoy Margaret’s talk below and keep an eye out for more posts this week from our Quantified Self Public Health Symposium.

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QS | Public Health Symposium: Susannah Fox on Secret Questions and Naked Truths

Personal data, personal meaning. That’s the guiding principle of much of the work we do here at QS Labs. From our show&tell talks and how-to’s, to our worldwide network of meetups and carefully curated unconferences, we strive to help people make sense of their personal data and inspire others to do the same. However, over the last few years we’ve started to see that there is a third actor in the Quantified Self space. Data collected in the ordinary course of life can hold clues about some of our most pressing questions related to human health and wellbeing. Personal data might be a resource for public good.

On April 3, 2014 Quantified Self Labs with support from the Robert Wood Johnson Foundation, the US Department of Health and Human Services, and Calit2 at UCSD hosted the first Quantified Self Public Health Symposium. We gathered over 100 researchers, toolmakers, science leaders, and pioneering users to open up a discussion about what it means to use personal data for the public good. Over the course of the day we hosted a variety of talks, discussions, and toolmaker demonstrations. This week we’ll be highlighting some of the outstanding talks delivered at the symposium and we’re kicking it off with one of our favorites.

Susannah Fox has been a friend and colleague for many years. Her pioneering work at the Pew Internet and Life Project has inspired us many times over and remains the standard for research pertaining to self-tracking. We asked Susannah to help us open up the meeting by discussing some of her research findings as well as her thoughts on self-tracking in the broader landscape of health and healthcare.

(A transcript of Susannah’s talk can be found on her website here.)

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